As parents of children with
disabilities, one of the vulnerabilities we face is the prospect of
personal isolation, a thinning out of ordinary relationships to the point
where our family’s circle (and ultimately that of our child) narrows down
to service providers and 'others like us' – other families who have
children who live with disabilities.

This ‘narrowing’ stems
from four sources:

First, it is an unhappy fact of
contemporary North American life that people remain uncomfortable with
disability in general. People may be particularly uncomfortable when
someone close to them is ‘struck by’ a disability. We ‘don’t know what to
say’; we ‘don’t want to interfere’, and we are afraid that if we open up
communication we will touch a thread of sorrow that may be uncontrollable:

Fear is the mind’s reaction against the
inherent generosity of the heart. Because the heart knows no bounds to
its giving, the mind feels called upon to define limits.

-- Ram Dass

Second, because our society is
uncomfortable, the family is likely to feel uncomfortable about the
prospect of ‘being a burden’ to their friends; we become reluctant to
‘impose’, to ask our friends to extend practical assistance.

Third, the family may find themselves
overwhelmed in terms of time, energy and attention by the child’s specific
needs and the new demands of engaging with the service system. Any parent
can tell you that caring for a young child seems to take up all of your
time. Caring for a child with a significant disability is likely to be
even more demanding, and the parents may find themselves swamped with
disability-related appointments, meetings, support group gatherings, and
so on.

Finally, in North America, family and
community ties are fragmented at the best of times. Our society prides
itself on being highly mobile, independent, ready to ‘move on’ at the
slightest whim or to relocate quickly in a search for solutions to
economic, social or family problems.

However (and this is a big however)…

If it is true that the quality of our
child's life (and his family’s life) will be greatly enhanced by the
presence of a large circle of people who know him, love him, aren't afraid
to touch him or to be touched by him, and know that they will be part of
his future and he will be part of their future, forever...

If it is true that our child’s
opportunities will be greatly enhanced by long-term, thoughtful,
on-purpose connections with many ordinary citizens – people whose lives
are anchored in the larger world, the broader cultural, economic,
congregational, and social environment...

If it is true that our child's
development can be greatly enhanced by loving and enduring connections to
other children and adults who help us define our identity – who shape our
understanding, expectations, hopes, social expressions, etc....

Then it is important to focus at
least as much of our effort, thinking, learning, and personal action
in the direction of 'the boundary with community' as we invest in 'the
boundary with the service system'.

Working on 'the boundary with
community' doesn't mean recruiting community members into the world of
disability. It means remembering (which is another form of conversation)
that we are all part of a larger world, and remembering together that a
great community systematically identifies, mobilizes and celebrates the
gifts of every one of its members.

It doesn’t mean just yearning for
connection. It means taking the difficult step of asking for
involvement. It means coming to terms with the fact that true friendship
is active and that it is woven of threads of joy and threads of sorrow.

It means taking the very difficult step
of acknowledging our own self-isolating behavior.

It means recognizing and
consciously resisting the powerful gravitational attraction of formal service
system. We see a pattern of professionals and other parents sending the message that "The most important work you can do as a parent is to get
skilled at finding services, using services, advocating for services"
– a
regrettably consistent emphasis in early intervention programs, child
guidance clinics, diagnostic and treatment centers, advocacy associations,
and disability support groups.

Of course these conversations
are difficult at first. It is difficult to say to our old friends, "I
need you more than ever now". It is difficult to say to our church, "More
than ever, we’re called to be community for each other". The good news is
that people are yearning to be asked. So often we’ve heard people
say, “We wanted to do something, but we didn’t know what to do”.

Some time ago we developed a graphic of
a 'family pattern' – an intentional pattern of thought and action that,
ideally, should be 'there' for any child, in any family:

As we begin to navigate the boundary
with the community (Faye suggests calling it a shoreline), we make a
discovery. Beyond the ‘sweet places’ of friendship and extended family
life, there are other places in the community that can be particularly
welcoming and fruitful. Think about the places where people feel most
deeply valued and deeply ‘at home’ – our churches, synagogues and mosques,
places where a shared culture, or a shared passion for justice, for the
environment, or for creating beauty draw people beyond the usual
boundaries of age, economic status, and even disability.

If we pay close attention, we may
discover that this is not only a place of hospitality and welcome, it is a
place of abundance. The congregation of a small church touches
dozens, perhaps hundreds of other ‘places’ in our community. Harry goes
to work at the tractor plant. Tom prints the local newspaper. Laurie’s
father belongs to a group that rebuilds antique airplanes. Lillian is
connected with the Swedish Cultural Society. Jack plays a great bluegrass
banjo and has dozens of good friends in the music community.

One of the gifts that these friends can
offer is to look for our child’s gifts, delights, and interests, to
introduce him to people whom they already know and trust, and build
bridges to the ‘places’ where they already have a presence – places where
those gifts and interests will be welcomed and celebrated.

We live in an abundance of
connections. However, far too often we turn Harry, and Tom, and Lillian
into fund-raisers for the service system, or recruit them into volunteer
roles that are mere reflections of traditional ‘service’ roles, and we ask
them to leave their real identities at the door. We move from abundance
to scarcity.

Our friend John McKnight has shared
some ways of helping us recognize some of the sweet places in our
communities. John reminds us to look for places…

·Where people come
together by consent, rather than by control;

·Where relationships are
based on affiliation and shared interest, rather than exchange;

·Where people are always
identifying, inviting and mobilizing one another’s gifts;

·Where the culture
expresses itself in the form of stories, rather than data;

·And where ‘we hear people
singing’ because people are making music, rather than consuming
music, making art rather than consuming art.

The reality is that even with children
who do not live with disabilities, the family isn't 'big enough' to do
everything alone. Our highly mobile, fragmented society is living with
the consequences of fragmentation as families become more and more
separated from extended family, friends, congregational life, and
community life.

This is a far more pressing
reality when a child lives with a disability – the ‘nuclear’ family simply
isn't big enough. We may try to fill the gap with 'services', but the
truth is that our sons and daughters need the ongoing commitment, support,
devotion and connections that can only be offered by true friends, and
which can never really be 'delivered' by formal services.

Wendell Berry reminds us:

We hear again the voices out of our
cultural tradition telling us that to have community people don't need a
'community center' or 'recreational facilities' or any of the rest of the
paraphernalia of 'community improvement' that is always for sale. Instead,
they need to love each other, trust each other, and help each other. That
is hard. All of us know that no community is going to do these things
easily or perfectly, and yet we know there is more hope in that difficulty
and imperfection than in all the neat instructions for getting big and
getting rich that have come out of the universities and … corporations in
the past fifty years.

-- Wendell Berry, Home Economics

Just to be clear… We are not saying
that services are ‘bad' or irrelevant. We are simply saying
that they cannot be a sufficient foundation for a good life. We need to
do everything we can – which means taking action – to keep our
lives in balance, our relationships in balance, and our hearts in balance.
Remembering to pay close attention to the shoreline with community and
having the courage to call upon the bonds of friendship can play a big
role.